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Not sure about this pain

Posted , 5 users are following.

Susanne_M_UK
Susanne_M_UK

I'm currently on 25mg Pred for GCA. Before I was diagnosed at the end of last year, I was on a maintenance dose of 2.5 for PMA, and as I had some pain in my shoulders then, increased my dose to 5mg.

I'm now on the higher dose and have have had a fair amount of stress due to various things. The thing I'm asking about is, can PMR rear it's head at the level of Pred, or is it GCA? Is my pain in the shoulders and severe lack of muscles in my legs, to the point I can't really walk much, caused by GCA/Pred or has the PMR come back? I know that at the level of Pred I'm on, it shouldn't have, but it feels like it has. The pain across my shoulder feels very much like PMR.

I have had a fair amount of stress lately, but would have though the Pred would have taken care of it.

2 likes, 29 replies

29 Replies

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  • jean05221
    jean05221 Susanne_M_UK

    Posted

    Suzanne - I have GCA and am back up to 60 mg Pred (from 25) after a particularly nasty flare. My thigh muscles were affected by debilitating weakness about 6 weeks after starting 60mg Pred last July (2014).

    I can sympathise entirely - going up & down stairs became very difficult - as if my legs wouldn't do what I was aking them to do.For months I hauled myself up by holding the hand rail with both hands. 

    I can only walk short distances before my legs just stop! Very inconvenient if out of doors. My Jaws do the same whilst eating but that's easier to cope with.

    My rheumy says it's the Pred that can "go for" the big muscles.

    The longer we're affected, there's more of a chance that the muscles will become deconditioned and not recover entirely as Pred is reduced.

    I've been started on a  "modest" rehab program at my local gym - under constant supervision as rheumy thinks I am showing signs of deconditioning - poor balance, shaky legs & arms, staggering gait & shuffling.

    Pred has landed nealry every side effect in the leaflet on me so I do need to begin reducing urgently but still have active GCA pain & disturbances.

    Maybe you could ask your  Rheumy if gentle exercise designed to encourage the muscles affected would be in order?

    I had to be assessed by a physio as well as a rehab specialist at the gym to decide whether this was a suitable and safe option for me.

    I've been doing it for 2 weeks now and I think stairs are marginally easier & I can walk about a coule of hundred yards now without stopping.

    Energy levels have caused me to miss i session only and I asked hubby to  "just get me in the car and get me there) on another ocacasion, then I did only part of my 10 min programme..

    Let me know how you get on if you follow this up. Pred can cause such problems, but we all know we'd be so much worse off without it!

    Jean

    • EileenH
      EileenH jean05221

      Posted

      Those of you who are having muscle wasting/deconditioning problems could ask your doctors if they would consider trying another form of corticosteroid. I don't know what you are on but I had no real problems with prednisolone, either as ordinary white tablets or as enteric coated and now have even less trouble (I have lost weight!) with a form of prednisone. In between I was on methyl prednisolone (Medrol) and I had delightful side effects: muscle wasting, massive weight gain and a dark beard (I have been totally white for 25 years!) and it didn't work at all on the PMR!  I have also come across someone who is on hydrocortisone for PMR - it means 3x day for the tablets but it seems to work well for her.

      I was like you Jean in the summer of 2013 - not just due to the Medrol which had made me pretty bad anyway but also 10 days of Lipitor (a statin) finished me off completely. Anything more than the flat was beyond me even with crutches and I could just get to the village after a month or so. Mercifully we have a lift and live in a flat! Now we walk briskly round the circular walk in the village, a good 30 mins, most days. At the start I could only manage half of what we do now in 40+ mins.

      You will get there. smile

  • Susanne_M_UK
    Susanne_M_UK

    Posted

    Eileen, I really hope it's not MPS! I have enough to deal with without adding to the list. ;-)

    Linda, yes let's compare notes.

    Jean. I was due to start Nordic walking sessions at the end of March (as a result of being introduced to it at one of MrsO`s support meetings,), but developed a serious chest infection which I'm just getting over, so have had to postpone until I'm better, as still coughing and short of breath. Just standing up in the kitchen to make a cup of tea means I have to support myself by hanging onto the worktop.

    • EileenH
      EileenH Susanne_M_UK

      Posted

      I'd take just just MPS over just PMR any day!!! It's far easier to do something about - it took me a few months but it is pretty much all gone, just very occasional twinges. Once it was sorted out and my back muscles were in fairly good condition I have been able to reduce the pred steadily to a really low dose - where before over 10mg still left me in pain. It isn't coincidence. 
    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      Well, yes! Just don't need another complication! Can't cope with this right now.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Susanne_M_UK

      Posted

      Well Susanne, I believe there is your answer to your increased symptoms now that you've mentioned it: the chest infection!  Hopefully, once you have completely recovered from the coughing and shortness of breath, you will start to feel better.  If we go down with infections whilst on high doses of Pred, the infection is likely to take more hold than usual and at the same time have a knock-on effect on our PMR/GCA.  I hope you feel better soon. 
    • Susanne_M_UK
      Susanne_M_UK MrsO-UK_Surrey

      Posted

      You could well be right. I just didn't connect it, as the increased pain only started quite a while after the chest infection, but maybe the strong antibiotics kept it at bay.
    • EileenH
      EileenH Susanne_M_UK

      Posted

      I have heard of other people with inflammatory arthritis saying the pain improves while they are on antibiotics. And that when they have pain from something not connected with the arthritis the arthritis pain is improved. 
    • EileenH
      EileenH Susanne_M_UK

      Posted

      Not just that - we have colleagues in Budapest, the husband is a doctor. The wife developed what appeared to be PMR but it required too high doses of pred and she became Cushingoid (not sure how high, I was never above 20mg but became Cushingoid well below that). He collaborated with his rheumy colleagues and they put her on low/moderate dose abx for a long time - complete recovery. I've not seen them since he told me about it to discuss it in more detail. I did find it interesting - and she wasn't likely to be Lyme Disease i don't think.
  • Susanne_M_UK
    Susanne_M_UK

    Posted

    My blood test this week showed increases in ESR and CRP, respectively 34 and 13.6, well above the previous levels, which were well below 10.

    Spoke to a GP, yet another one, as the one I like is on holiday. He told me to wait until I saw rheumy in 6 days time, as he "didn't want to mess around with my dose and was not concerned at the levels".

    I rang rheumy' s Secretary and told her. Rheumy then rang me himself. He asked me to increase Preds back to 40mg until I see him next Thursday and to go straight to A and E if I have a temperature or feel unwell. He also talked about starting methotrexate soon, as I have been on Preds for so long and he thinks it will be difficult to get me down to a small dose reasonably quickly.

    Rheumy asked if I had told GP of the bad pain in my temple, and I confirmed I had. He asked this twice, and I think he found it strange that GP had not been concerned.

    So, at least the pain should go away soon.

    • EileenH
      EileenH Susanne_M_UK

      Posted

      Hopefully he will write to the GP with a lesson on GCA in words of one syllable or less. No, those figures aren't horrendous on their own - in tandem with your diagnosis it is obvious the dose you are on is not enough. 

      Really not convinced about MTX - lodger took well  over 6 months to reduce from 60 to 20 and as far as Kirwan and co are concerned that is to be expected. You have taken time because you have been messed about. Whatever...

    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      I was on MTX for PMR several years ago. Just for a short while. I'm not that happy about going back on it, but we'll see what he says. He's my best option, bearing in mind my GP Practice seems incompetent.
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